Researching the Next Step

OK, now that the last visit to the PraxisKlinik is under my belt, I can turn to the question at hand: what's the best way to continue my treatment going forward?

One option is to continue the visits to Dr. Thaller every 6 weeks or so. The three treatments I'll continue with would be the fevertherapy, the Newcastle Disease Virus injections, and the Dendritic Cell injections. (Alongside these there are the additional treatments of vitamin C and ozone infusions, and local hyperthermia).

Liz and I have 20 vials of the virus with us here in the States, so the injections with those will continue through January in any case.

A second option is to work with Dr. Pfeifer at the Aeskulap Klinik in Switzerland. He has a very interesting-sounding protocol for prostate cancer, which consists of high dosages of four different supplements. (I've already started taking one of these -- ProstaSol -- and my PSA went down by over 50% in one month! )

The third option is to go with the enzyme therapy that Dr. Gonzalez is known for. This is an intensive self-care program consisting of supplements (mainly pancreas enzymes), a strict diet, and detoxification procedures. I'm strangely drawn to this path, as it is a way that 1) I can take responsibility for controlling my own health, and 2) is something that I can maintain over the long term, as I manage this cancer as a chronic condition. (I don't imagine that there will be a sudden cure for what I have, and the costs of Thaller's treatment -- around $15,000 a visit -- make it extremely hard to envision continuing to do it over the long term!)

In any case, I'm going to be getting some help in sorting these issues out -- I'll be doing another phone consultation next week with Dr. Ralph Moss, the über-researcher that keeps his finger on the pulse of all the new cancer therapies that are being tried.

Farewell for Now

Today's the last day of this visit to the PraxisKlinik. I try the fevertherapy this morning, and there's some lower back pain (strange…), but otherwise it's very light.

I get an injection of Newcastle Disease Virus in the prostate this morning, which is always exciting and fun. ;-)

I work out the bill with Christine, and happily hand her a check for 10,000 Euros -- nearly $15,000. Thanks to all the gifts and generous help from everyone, we were able to make this visit happen. If we're able to come again in January for the next visit, it will cost a bit more, nearly 15,000 Euros.

Around noon, Dr. Thaller comes upstairs to say goodbye to all of us, as he is leaving early in the day to go to a wedding. He shakes everyone's hands, says a few words, and starts to head off for downstairs. At the last moment he turns around and heads back toward my bed at the back of the room. He folds his hands at his heart and bows slightly to me, very reverently -- and I do the same in return. I feel honored by his salutation, and almost instantly I have the strong sense that this may be the last time I see him.

So a grand thank you to Herr Dr. Thaller and Christine and Michael and Tanya -- you have all been so very wonderful!

All The Gang

Today's a more social day at the Clinic. It helps that I decide that no how no way am I going to take the fevertherapy today! A little break is in order after the wild ride yesterday.

When I arrive at the clinic, both Christine and Dr. Thaller agree -- yesterday was a little extreme! Then I discover the key ingredient that was missing: I hadn't been taking Celebrex (a pain reliever) before the fevertherapy like all the other patients. I'm not sure how I missed this, as I don't remember anyone ever telling me. I suppose it could have been one of those moments when I was being overly-agreeable and pretending to understand something in German when I really didn't. Oh well -- at least now I know the trick to surviving the fevertherapy!

So without the shivering and the fever, it's easier to catch up today with all the other people in the clinic. Sometimes I might give the impression that there's no one else around, but we're all actually quite close together -- the clinic is quite small and can only hold 8 or 9 people per day. So Liz and I are able to have nice chats with the couple from Long Island, the guy from Canada and his daughter, and the nurses, Michael, Tanya and Christine. Even Dr. Thaller comes upstairs for a few minutes.

Not much else happens today. Christine finally clears my port (which has been blocked for extracting blood, but fine for injecting things) -- she hooks me up to a machine which injects 100,000 units of urokinase over an hour's period, which seems to do the trick.

The Luffa Cure

Yesterday during my acupuncture session, Dr. Thaller heard me sniffle (I've been having some congestion lately), and started talking to me about the Luffa Cure. It's a week-long procedure that takes place at the clinic to entirely cleanse the sinuses of any bacteria or other toxins. The centerpiece of the therapy is the installation of two luffa tubes up the nostrils, which supposedly initiates a huge release of mucous -- people who take this cure go through hundreds of tissues in a week.

Tonight is the second night in a row that I have been absolutely deluged with the sniffles. I'm blowing my nose every few seconds, and sneezing, and using up tissues by the handful.

I wouldn't be surprised at all if Dr. Thaller hit some acupuncture points during my treatment on Tuesday that triggered a sinus cleansing -- a "Lite" version of the Luffa Cure, without the Luffas.

He has a lot of tricks up his sleeve -- I'm betting something like this is the case!

Showdown at the Fevertherapy Corral

Today starts out normally enough. I'm thankful that I'm not having any adverse reaction to the dendritic cell injections from yesterday.

I get my fevertherapy injection, and Christine tells me that it will be a moderate dose. I head upstairs to my feverbed, and settle in for the wait. In about 20 minutes, the shivering starts in earnest: and today, more than ever before, I'm hit by an intense breathlessness. It's really hard to catch my breath -- I have to sit up to make it at all possible.

Michael asks me if this is serious -- I say yes -- and he bolts downstairs to get Dr. Thaller. In seemingly an instant, the whole crew is at my bedside: Dr. Thaller, Michael, Christine and Tanya. It looks like a SWAT team in action: everything is a blur of slapping on electrodes, stethoscopes, checking and re-checking the various monitors around my bed (and setting new ones up). Dr. Thaller zooms in to give me a quick ear acupuncture (like staple guns to the ear), there is a quick injection into my port of aspirin to calm the fever and digitalis to strengthen my heart.

There's probably a lot more going on, but I'm not exactly paying full attention at this moment. I'm really struggling for breath, my heart is beating hard, it all kind of hurts, and, truth be told, I'm a little freaked out. Dr. Thaller implores me to breathe deep, into my diaphragm, in an attempt to calm things down.

The strangest part is that after everyone has done all the interventions that they can think of, there's nothing for them to do but sit around and watch my strange predicament. I'm still heaving, gasping for breath, but nothing is getting any worse, and I have the presence of mind to perceive that I must be a pretty strange phenomenon to everyone right now.

At one point, Dr. Thaller leans over to Liz and stage whispers to her: "His lungs are fine…his heart is fine…I believe that part of the struggle is in his *soul*!"

This turns out, chronologically and psychologically, to be the climax of the day's experience. I eventually calm down and go into a deep fever: 41.0 degrees (105.8 in Fahrenheit). This is very high and will be very effective in killing cancer cells. I'm always pretty delirious until the fever gets below 38.6 or so -- I keep asking Liz every couple of minutes, "What time is it?", but I never remember what she says.

At the end of the day I am completely spent, again.

I'm not sure what to make of Dr. Thaller's comment about the struggle for my soul. It makes me realize that this week is a very transitional point -- like a swing at the top of its arc, or a pendulum just before it heads back in the opposite direction. There's been a quiet here as the previous period of my life ends, and a beat, just a moment, before the next phase begins. The last couple of months has been all about finding out about my diagnosis, searching for the best treatment, fundraising so I can get here (with an extra dose of helping out my Dad during his own health crisis). Now all those events are at least temporarily stable, and I' m headed into a full-time job search and discovering the next chapter of what it is that I'm doing here.

In a strange way I'm grateful that the transition between these two phases was so clear and dramatic.

Welcome to the Big Top -- Step Right Up!

Today is the big day, the dendritic cell injection. It's the main reason I'm here (and it's also the most expensive treatment of the visit!)

The prelude is an acupuncture treatment, to prevent further lower back pain like I had yesterday. Dr. Thaller's acupuncture is unlike any that I've received in the States. There are the normal needles (in great profusion!), but there is also a steel cylinder that sounds (and feels!) almost like a staple gun -- he lines up the cylinder with a particular point, and then BAM! -- a spring-loaded tip slightly punctures my skin and infuses it with a homeopathic solution. It doesn't really hurt, but it does pound me with some force; I have to focus clearly in order to maintain my balance.

Afterwards I have a relatively light fevertherapy -- nothing like the reaction that I had yesterday, thanks to the acupuncture.

At the end of the day comes the main event, the dendritic cell injection. Dendritic cells that have been prepared from my own white blood cells (which were collected on a previous visit) are injected into both of my shoulders. Dr. Thaller has an intense focus while he's doing the injections: he seems completely at one with his needle, and his motions are a completely fluid dance around both of my shoulders. He makes about 10 injections into each shoulder, varying the location and the length of the shot each time he goes in with the needle. It's strangely ritualistic -- and when it's over, we both look at each other as if to acknowledge the completion of the ritual.

There's one additional bit to take care of, though: the injection of a dose of immature dendritic cells directly into my prostate. This dose has been prepared differently from the previous dose, and is keyed on the cells finding cancer cells that have been previously marked by the Newcastle Disease Virus that I have been taking.

I never get used to these direct prostate injections. They are only 10 seconds long, but they are supremely uncomfortable, and in addition there is a roulette effect at work. Depending on whether the needle hits one of the several nerve bundles that go through the prostate (and depending on what angle at which it hits), I can get a severe jolt of pain. Unfortunately, this effect is completely unpredictable. And today I get a small version of this jolt. Fortunately, it's over quickly!

Round 3 at the PraxisKlinik (ground level)

Today I'm back in the thick of the action at the PraxisKlinik. I get a small dose of fevertherapy for my initial visit -- and even so, Christine gives me an aspirin injection halfway through to minimize the effect. She wants to make sure I don't have too strong a reaction, in preparation for tomorrow's injection of dendritic cells (the centerpiece of this week's visit.)

Despite these precautions, I have a really strong reaction to the fevertherapy -- lots of shivering, and a relatively high fever of 102 degrees. When I try to lie down for my hyperthermia treatment, I'm not able to lie straight because of pain in my sacrum and lower back -- Dr. Thaller almost insists that I get a shot of fenadryl, but I insist on letting it calm down on my own, and eventually I'm able to relax the spasm and let the fever wind down on its own course.

For dessert, I get an injection of Natural Killer cells directly into my prostate. As always, this is one of my most fun activities here at the Klinik!

At the end of it all, it's an unexpectedly exhausting day. I can only walk home by focusing on one step at a time. And it's late in the evening before I feel normal again.

Round 3 at the PraxisKlinik (10,000 foot level)

I'm back at the PraxisKlinik Arno Thaller in Germany this week, and frankly the main thing I have to report so far is a really strong sense of serenity. I'm looking at the whole process a lot more calmly, and even the dendritic cell injections today (which have filled me with minor dread all month!) came and went today and it was no big deal. (don't get me wrong -- *they are not pleasant* ! But still, it was all over within minutes -- the injection into the prostate, and a couple of dozen injections into each shoulder.)

Part of it is that the weather is very cozy let's-stay-inside weather: the temperature is hovering around freezing, and the drizzle outside can't quite decide whether it's rain or snow.

Part of it is that Liz and I have been doing exercises this week focusing on how to build peace of mind.

And part of it is that all of the back-and-forth about this particular treatment path has played itself out. There was a great deal of drama in finding this place, and in setting up the treatments, and in going through the first two rounds of the therapy. There was also a very intense and wonderful process of everyone making such generous contributions so that I could come here and receive the treatment -- and for that I am very grateful to each of you!

Now all that is behind us (for now at least; nothing stays the same!). It's a strange comfort to be able to just cruise through the therapy almost quietly.

Snowy Pilgrimage

We settled down into our house in Markt Berolzheim yesterday evening after 22 hours of travel.

Today we woke up and it's snowing!!!

It just started yesterday, it's the first snow of the season -- roses and other blossoms are still on the bushes, and all the plants are all a startled green. We made our pilgrimage through the snow to the lindens, drank some of the water, and said hello to the place.

Afterwards we had a wonderful shopping expedition in the tiny market here. The friendly shopkeepers fixed us coffee and told us about all the cakes and pastries that they had prepared for St. Martin's day, celebrated next weekend here since it's an Evangelical village (other nearby villages are Catholic and celebrate it on December 6th.)

And yes, "Evangelical" here means a much different thing than it does in the States!

PSA down

Good news today when I retrieved my PSA score -- it was down to 2.2 on October 30th. (compared to 4.2 on October 5th).

This is really good news for a couple of reasons. Most obviously and simply -- the PSA is down, which is always the goal. This is actually the lowest it's been since I was diagnosed in July.

The other bit of good news is that the only change in my therapy between October 5th and October 30th was that I started taking ProstaSol. (In fact, my hormone blockage therapy was wearing off between those two dates, and I didn't get my next shot until October 31st. So I wouldn't have been surprised if my PSA had gone *up* instead!)

This means that I can pretty clearly attribute an almost 50% drop in my PSA to the ProstaSol. For now, it is *definitely* staying on my supplement list -- even though I have to order it from the Netherlands!

Another Viewpoint

Yesterday I had my weekly appointment with Francis, a local healer that several people have recommended very highly. He's humble, non-descript, Scottish, and has a definite spiritual power. I've felt things move during his sessions with me. And I'm a big fan of synthesizing several approaches, so I see him regularly.

I've always been with him in groups, but yesterday I started out the session with him on my own. He asked me about my Gleason score (a particular way of measuring the extent of the cancer), and asked what I was doing to treat it. I explained Dr. Thaller's procedures briefly.

Then he asked me if I had become vegetarian. "No," I said, "I've cut out red meat but still eat chicken and fish." He launched into a very articulate defense of not eating meat because of the death it necessarily entails. He was strong and pretty relentless. "There's no happy pill you can take to cure your cancer," he said. "Nothing will really happen until you take responsibility for curing your own cancer by eating the right things, and by helping heal the pancreas -- when you have cancer you don't have a proper supply of pancreatin. It's your own choice, of course, but that's what you're looking at."

I was pretty taken aback -- not just because of his firm tone, or the fact that this was the first time he had spoken more than a couple of words to me. It was the synchronicity at work. What he described was almost exactly the same treatment that Dr. Gonzalez recommends, and that I've been reading extensively about. Chalk it up as one more strong clue from the universe.

More Treatments On the Way -- Thanks to You!!

We've done the math, and we now have enough to start the next week of treatments at the PraxisKlinik Arno Thaller in Germany. (we won't have enough to get the full set of treatments that are available, but we can get the dendritic cell vaccine, which is the most important part to continue.)

All of this is possible because of your generous contributions -- thank you all so much!!

Dr. Thaller has recommended at least two more rounds of the dendritic cell vaccine after this one, and each visit will be another $18,000 -- but we have another few weeks to solve that problem.

Why did we decide to continue with Dr. Thaller's treatments after the doubts that I expressed in my earlier post? The simple answer is that I don't want to leave any stone unturned in getting healed, and Dr. Thaller's treatments have been very highly recommended. What's more, doing the treatments at his clinic *doesn't preclude* any other treatments that might do me some good later on. As long as I'm on the "symptom-free window" provided by the hormone therapy (which will last between several months and a few years), I'll be in good shape to receive additional treatments.

So Liz and I leave for Germany this Thursday -- wish us luck!

The Reviews are In

I just received an updated version of the Moss Report on Prostate Cancer*. Inside were a couple of positive mentions of the doctor I'm seeing in Germany, Dr. Thaller:

Another German practitioner with a strong interest in immunotherapy is Dr. Arno Thaller, whose practice in Markt Berolzheim, near Nuremberg, uses immunotherapies based primarily on Newcastle disease vaccine. On the whole, I have a positive impression of Dr. Thaller. He clearly understands the latest developments in immunotherapy, but also has a good grasp of historical treatments of interest (of which Coley's toxins and Newcastle disease virus vaccine are prime examples – see later in this report). The biggest problem is that if you call the clinic you are very likely to get someone who does not speak English. That is what sometimes happens when you are dealing with a small, rural clinic like this one.

and later in the report:

Arno Thaller is a medical doctor in a small private practice in Markt Berolzheim, Germany (near Nuremberg). He has a web site at www.praxis-thaller.de There you can find a very intelligent essay that he has written on the immunotherapy of cancer. What distinguishes Dr. Thaller is his aggressive use of Newcastle Disease Virus (NDV) vaccine, as well as other immunotherapeutic procedures. He has had experience in treating even advanced cases of brain cancer. From my limited experience, he seems able to stabilize some such cases, although it is too early to say what the long-term effects can be. Dr. Thaller strikes me as caring and humane, with a good reputation among other German doctors. I continue to watch the evolution of his program with great interest.

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* Ralph Moss is hands-down the best researcher I've found on cancer treatments -- he keeps an eye on all the new research (both conventional and alternative), and then synthesizes and evaluates the information in reports on each type of cancer. The reports are available at his site.

Kudos to the Webwizards

I want to send a big shout out to Jane Dowling and Jaime Levy Russell, who did an amazing job helping me set up this blog, and putting together the helpnickwest.com site. Not only did they do a great job -- but they did it in the midst of their hyper-busy lives! I am exceedingly grateful to both of you!!

Eek, symptoms!!

Ever since I got the first shot in my hormone blockage therapy a few months ago, I've been relatively symptom-free. This is a wonderful thing -- the symptoms I was experiencing in July were *awful* -- real difficulty in peeing, unearthly constipation -- all kinds of wonderful dinnertime topics.

The shots (which go under various names -- I've had Eligard and Trelstar) -- last for about three months. Because of traveling to Germany, I hadn't been able to schedule my 2nd shot until this week. Since I was a few weeks behind, I started to notice the gradual reappearance of -- eek, *symptoms*!

It wasn't bad -- a slight difficulty in peeing and slight constipation -- but it was enough to bring me up with a start and remind me that the cancer wasn't just some abstract entity. It's a real, creeping thing in my system, and unless I find a way to destroy it by the time the hormone blockage runs out, I'm in a heap of trouble.

Fortunately, the Trelstar shot* has calmed down the symptoms. And I'm confident that the treatments I'm seeking will really do a number on the cancer that's remaining. But it was definitely a wake-up call to feel what the effects of cancer can be.

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* a few weeks ago, I mentioned that I would be substituting the supplement ProstaSol for the hormone blockage therapy. It turns out I received bad information -- the doctor who came up with the ProstaSol protocol recommends staying on hormone blockage therapy while taking ProstaSol. So I'm taking his advice.